Below, Lisa Lambert, the executive director of the Parent/Professional Advocacy League — subtitled “The Massachusetts Family Voice For Children’s Mental Health” — eloquently describes the public silence that usually prevails among those parents in the face of widespread stigma and hostility, and the damage it does.

By Lisa Lambert
Guest contributor

Lisa Lambert of PPAL

The best way to get help for your child with mental health issues is to talk about what’s going on. But most of us don’t, especially not at first. Adam Lanza’s mother, Nancy, was reportedly quiet about his problems. She was happy to talk about gardening, the Red Sox and her hobbies. But she was quiet (publicly at least) about her son. I have been, too. We learn to be.

Even among parents who have kids with mental health problems, many cringe at the idea of exposure. Liza Long’s stunning post,” I Am Adam Lanza’s Mother”, has prompted many parents to worry that she has exposed her 13 year old son to public scrutiny and taken a terrible risk. Other parents pour out their own stories, feeling the risk is nothing compared to the pain of dealing with mental illness all alone. I have been both kinds of parents – the one who keeps quiet and the one who shares her child’s story.

When my son was in elementary school, he was sometimes violent, explosive and unpredictable. His mind, his focus and his mood would shift and nothing could interrupt the explosion. Believe me, I tried. All I could do was send his younger brother to his “safe spot” and manage things the best I could. For reasons none of us understood, his brother was often the target. I worried for years that I would get a call that the state had removed my younger son because his older brother broke his arm or hurt him grievously. I went to all the best experts who speculated that maybe he was angry because his brother was “normal.” Why then, did he attack me too? And why did he also harm himself?

No one was ever sure about the why of it and we learned to live with the mystery and uncertainty. When he was a little older, my son was able to tell me that every day he woke up feeling emotional pain and most days it was simply horrible. When he exploded or when he hurt himself, it was like bursting a balloon, he said. The pain went away for a while. As he grew older, he hurt himself more and others less. He reasoned that it was morally a better thing to do. As his mother, I was still anguished.

When this first began, I told other mothers about it. They were the parents of his friends and had known him since he was a baby. Some of them would try to make me feel better. “All brothers fight” they’d say, “Yours are just more intense.” Some would look at me with horror or, worse yet, tell me to try things that I’d done long ago and found pretty worthless. It was clear that they thought it was either my skills or persistence that needed shoring up. I learned to avoid these discussions and got pretty good at deflecting questions. I learned to be quiet.

It isn’t just friends you are careful with. It’s your child’s teachers, his pediatrician and many others in his life. We all live in a society where the stigma around mental illness can stop us in our tracks. It’s far more serious than a lack of understanding. People repeat things to you that cut you to the quick and you learn not to tell them what you are going through. Instead, you talk about the Red Sox and gardening.

Then we turn to the mental health professionals, who we think, have seen all of this before. We learn once again, that we are often on our own. Insurance pays only for short visits with lots of paperwork requirements. There is a shortage of mental health professionals with expertise on the most “serious” kids. Parents like me are told, “I’ve done all I can for your child” and we observe he is not much better. We learn to manage the crises, lower our expectations of help and keep going because we know the burden falls on us in a way that would be unthinkable with another kind of illness. I’ve read that Adam Lanza’s mother found that only she could defuse his crises. I’m sure that’s what she did until she couldn’t any more.

Finally, if we are lucky, we find other parents like us. For many it’s both difficult and a relief to say my child is out of control or hurts himself or can’t seem to succeed. But this time the other person says, “Yes, I know. It’s like that at my house, too.” We share, we cry, we laugh. We applaud each others’ successes and commiserate over the failures. Most of all we brainstorm, we point each other in the right direction and we slowly make progress. And we are not quiet. At least not until we leave the room.

After a profound tragedy such as the shooting in Newtown, Connecticut, talk turns to ways to identify the next Adam Lanza. To do that, we need to be able to talk about our children and our families and receive back compassion, understanding and good advice. Until that happens, many of us will stay quiet.

Note: This piece is re-posted by permission; it was first posted on the PPAL blog here. And one of the responses there proved its point all too perfectly:

Earlier this week, I responded to a fb posting from a friend discussing the blog post “I am Adam Lanza’s Mother”. I did open myself in the post that I have two children with mental health needs and mentioned that I have a 13 year old daughter that has recently talked about suicide and cutting although the violence is towards herself, not others. One of the reply comments was from a friend of a friend – I read his profile – he is a 30 something male – a well, educated, father of a two year old. He commented that he will do anything to keep his precious child safe and… nothing personal… but he wants his child to have nothing to do with children like mine. The time has come for children like mine to be separated from children like his and put back in institutions and educated separately so his child can grow up safely. Its that kind of stigma that keeps us silent about our children’s mental health issues.

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Massachusetts is the leading laboratory for health care reform in the nation, and a hub of medical innovation. From the lab to your doctor’s office, from the broad political stage to the numbers on your scale, we’d like CommonHealth to be your go-to source for news, conversation and smart analysis. Your hosts are Carey Goldberg, former Boston bureau chief of The New York Times, and Rachel Zimmerman, former health and medicine reporter for The Wall Street Journal.

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